So, what’s in the Care Bill now and how has it changed? Importantly, will it really make a difference to carers’ lives? Here are some of the key changes…

Duty to promote wellbeing and prevent need for support

A key element of the legislation is the promotion of people’s wellbeing to prevent a crisis point being reached. Many people are not eligible for support from the State, but the Bill recognises that this shouldn’t exclude people from being able to access the right information and advice or from an assessment which would identify what kind of support is available in their community. We are pleased to see that the Bill now makes it clear that carers’ wellbeing should be promoted and that local authorities should reduce carers’ needs for support. But we also think these duties should include access to advocacy (independent support to help navigate available options).

Duty to assess carers’ needs, including the whole family

The Bill proposes new rights for carers so that for the first time they will have the same rights to assessment and support as the people they care for. A couple of helpful changes to the Bill make it clear that carers’ needs should be assessed before any financial assessment – previously we were worried that many carers would be excluded if they were above financial thresholds. Carers’ assessments must now include assessment of the day-to-day life outcomes that the carer wishes to achieve — another welcome move.

Meeting carers’ needs and charging for services

We are still concerned that local authorities will be allowed to charge for carers services, although the Bill now says that some exceptions can be made, for example for preventative services. However, this is not enough to ensure that carers are never charged. We know that it makes economic sense to support carers and we also know how important it is that carers are not charged unnecessarily for services that may be for the person they are looking after.
Carers Trust is calling on the Government to look again at this part of the law.

Sufficient services to allow carers to work

A very welcome development is that the law now includes a duty on local authorities to provide sufficient services in their area so that carers are able to participate in work, education or training. In too many cases, carers are unable to work because of the lack of care provided to the person they are looking after.

Parent carers and young carers

If it appears that a young carer may have needs for support after becoming 18 they will now be able to request an assessment under the adult law, regardless of whether they already receive support. However, Carers Trust doesn’t think that young people should have to request this assessment and we are very disappointed that the law still doesn’t provide equal rights for parent carers or for young carers.

Funding social care

You may have already heard that the Bill now also includes proposals made by the Dilnot Commission. It introduces a cap on social care costs and the upper capital limit is being raised to reduce the risk of people having to use most of their assets to pay for care. We are going in the right direction but the social care system is already seriously underfunded. With rising demand for support, the Government must act to addressthis funding crisis, so that new duties for support will actually make a difference to carers’ lives.

The Care Bill also includes provision for personal budgets and direct budgets for carers and new duties around safeguarding.

The full briefing will be published on Carers.org. For further information, please contact me: Emma Smale, Senior Policy and Parliamentary Officer, esmale@carers.org

A while back, a document called “Making it Real” was published. Carers as well as people who use services were involved in producing it, but for me, I feel we need to put this into the context of what needs to be done to support carers themselves to make sure they have choice and control too. So last week I was with Durham County Carers Supportand a group of amazing carers to talk about personalisation and what Making it Real means for them.

Personalisation – for people who get support from their local authority in England –can mean being able to choose the kind of care you want, when you want it, and provided by the right person. Carers said it can work – for example the carer who has had a service from Crossroads Care for years but their contract came to an end locally, so she got a direct payment to keep employing the same worker. It was brilliant to hear that so many people had positive experiences of Crossroads Care, as well as Durham County Carers.

However, it wasn’t the whole story. Most carers who had a direct payment said the paperwork involved had been fearsome. Some said it has taken six months or more for their direct payment to be sorted out, leaving them in limbo all that time. Time delays may not mean much for professionals, but they leave carers stranded. And a number of carers said they just hadn’t been offered any choice at all, sometimes because there simply isn’t anything to choose from.

Those carers who seemed to have had the worse time were those who had been transferred from a local authority budget onto NHS Continuing Care. This is supposed to make life easier – it means not having to pay for care, apart from anything else. But the stories they told were awful. One told of how she had a package which was working well , but on transfer to NHS Continuing Care all that stopped. They could no longer have any choice at all – they just had to take what they were offered, with a huge delay in getting things in place. The social care agencies they used to work with would no longer even give advice and just referred back to the NHS. Instead of helping, it’s made things much worse.

What came out loud and clear was the importance of professionals really listening and acting on what they have heard. Carers were sick of being palmed off and excluded.

Carers also said they need properly trained and qualified care workers – ones they can depend on. They need to be able to provide the expertise and continuity that carers need to be reassured that the person they care for is safe.

I don’t think these things are much to ask for. Thank you to everyone from Durham for an excellent day last week. You really showed what would make it a bit more real for you.

Another Queen’s Speech and another missed opportunity for reforming the Social Care System. I wish I was surprised, but sadly this Government is rather good at delaying really important decisions or making them far too quickly.

So, the Government has decided that urgently needed Social Care legislation can be put off for at least another year and whilst there will be a draft bill, which offers some hope, it won’t look at the critical issue of funding. This is bitterly disappointing for everyone who needs social care services and for carers. We all know that real progress can’t be made unless we find a way of paying for it, so why can’t the Government see what we see?

The thing is another year really matters when the system has been underfunded for decades. At this moment, demand for services is increasing and the amount of cash available for care is falling. Somehow, the Government seems to think that people can carry on looking after each other without support or access to affordable and good quality services. They seem to think it’s ok to carry on relying too much on carers and ignoring the truth that the system is broken.

In fact for 64 years, since the National Assistance Act in 1948, the laws affecting some of the most vulnerable people in society have been messy and confusing. Successive governments have pondered the need for wholesale reform but the issue of funding has been sidestepped every time.

As this government scales back spending on public services and radicalises the welfare system, we are reminded daily that there is no money in the coffers. But not facing up to the funding crisis in adult social care is an incredibly dangerous strategy. We cannot let this situation go on and on until there is no ‘system’ to speak of and carers are left on their own.

This would save the state millions, but is this the ‘Big Society’ we want to part of? Surely, there is nothing fair or sustainable about allowing Social Care provision to diminish and expecting families to pick up the pieces?

What’s more, failing to address the funding gap and make reform a priority means that the pressure on the NHS and health services will continue to grow. It’s a sad fact that carers know, better than most, that failure to meet needs by social care results in a crisis that health services have to deal with – those years of isolation that lead to a breakdown and admission to hospital means extra cost for everyone. Reform also provides an opportunity to integrate health and social care services and to ensure that people receive co-ordinated care.

There is a real risk that time will run out for this Government and Social Care reform will be unfinished business. Before we know it, it will be time for another election and it is perfectly possible that a different Government will then have to sort out an even more dire situation.

We’re not asking for ‘quick and dirty’ law making which will only be damaging, but we cannot afford to loose this opportunity to make desperately needed change to the system. We need to act now and make it clear that older and disabled people and their carers cannot wait. We will not accept any more delays for reforming Social Care.

For years we’ve been campaigning for a total change to the social care system in England which has been with Government inactivity. But now, there is a chance.

Government health ministers, Andrew Lansley and Paul Burstow, are generally supportive of the recommendations made by the Dilnot Commission. And they would be supported by Labour if they implemented these recommendations.

“…the next time we read about carers breaking down because they receive no support, we will blame you”

But the person we need to convince is George Osborne, Chancellor and the man who manages Conservative political strategy. Implementing the changes would cost £1.7bn p/a which is a lot of money but equal to only 0.25% of total current Government spending.

The message we need to give George Osborne, David Cameron and other MPs is this. If you do not implement these recommendations, then the next time we read about carers breaking down because they receive no support, we will blame you. The next time we read about people receiving shockingly poor levels of care, then we will blame you. The next time we hear of councils cutting vital services because they have no cash, we will blame you.

With power comes responsibility. Osborne and Cameron have the power and the opportunity to improve the lives of millions, they must take responsibility for doing so.

But we each have a role to play. Whether you need social care support now or not, at some point you or your family will. We have a responsibility to our friends and family to make sure we grab this chance for change.

We’re organising a mass lobby of MPs on 6th March. People from all over the country will have the chance to meet their MP in Parliament and lobby for better social care support in England.

I promise that I have an exciting side to me, but I love statistics. Even if statistics don’t provide the whole answer, they usually at lease signal the questions that need to be answered.

Good research can often challenge preconceptions and change what people think. They can challenge what we unquestioningly hold to be ‘common sense’.

The Health and Social Care Information Centre produce huge amounts of statistics on virtually everything related to health and social care, and I love them for it. They have recently released two sets of statistics that I think would surprise many people, and many even challenge our preconceptions.

So I want to put this to the test. Click on what you think is the right answer to the questions below and we will see what people think. Then on Wednesday 14th December, I’ll post the correct answers on this blog and we can compare reality versus what people think.

Trust me – it will be exciting!

These results are for people in England receiving social care support during between 1st April 2010 – 31 March 2011.

You are more likely to be satisfied with the support you receive if you get a personal budget (PB) or Direct Payment (DP) rather than a council organised day or home care. This supports the popular and Government led drive to increase the use of personal budgets.

However, if you delve in the results from the survey of adult social care users, a different story emerges. People in residential care are actually the most satisfied with the services they receive and they score highest on most of the questions answered, going against common perceptions.

But the real surprise is that people receiving council organised day care or home care are more likely to say they have adequate control over their daily lives compared to people using personal budgets or Direct Payments. Remember, the whole point of PBs and DPs is that they are meant to give people more control.

Furthermore, people in day care are more likely to have desired levels of social contact than holders of personal budgets or Direct Payments. They are also more likely to be spending time doing they want to. The question is how can you read these results and still assert that day care centres were ok for the 1950s, but people have moved on and want something different in the 21st century.

One answer I heard was that day care centres have moved on too, and are radically different from what they were like in the 1950s. Another possibility is that the value of personal budgets people are receiving does not allow them to purchase services similar to what they were getting from the council. One council recently offered a personal budget of £700 p/a when previously they were providing 12 weeks of residential nursing care, which would cost at least £7000.

I put the results from the survey to Paul Burstow MP (Minister for Care Services), asking how we should reflect upon these. I wondered whether they would knock his confidence in the benefits of people having a personal budget. They didn’t. His explanation for the results was that there needs to be greater choice of support providers meaning personal budget holders would have more choice about what they do with their PB and would therefore lead to improvements in satisfaction, levels of control and doing what you want to be doing.

My own opinion is that there is something in all three answers, but it has led me to believe that people must still have the opportunity to take part in group activities such as day clubs and that we must work harder to support those with personal budgets.

Whereas Labour are still deciding their priorities, the Conservatives appear to have nailed theirs to the mast. And social care isn’t there.

Eric Pickles MP, Secretary of State for Communities and Local Government began their conference by announcing that

Eric Pickles MP with David Cameron

£250m had been found which would be given to councils for weekly bin collections. Funding for social care comes from councils, and funding for local authorities comes from the Department of Communities and Local Government. So rather than giving this money to councils to spend on social care, the Government are saying it has to be spent on bin collections.

This Government, and Pickles in particular, has been adamant that decisions must be made at the local level, and councils given freedom to decide. Yet, Pickles is not making this £250m available for whatever councils think it could best be spent on; it is only available for councils who want to move to weekly bin collections.

Of course, some councils already run weekly bin collections, and a couple of councillors at the Conservative conference were left wondering whether they should stop that so that they can claim some of the £250m to reintroduce what they are already doing.

This was followed by George Osborne’s announcement that Government had found an extra £800m to give to councils who committed to freeze their council tax rates. Again, this newly found money is not available for councils to spend as they see best but can only be used to compensate councils who do not increase council tax rates.

Compare this focus on bins and council tax to social care. I asked Lord Freud (DWP Minister) and Greg Hands MP (Parliamentary assistant to George Osborne) about how important it was to implement the Dilnot Commission’s recommendations on social care but received no answers. I asked Maria Miller MP (Minister for Disabled People), who said meeting the challenge of our population’s changing demographics was one of our biggest, but instead of discussing Dilnot’s report, focussed on how introducing the right to request flexible working for all will help carers trying to juggle work and care.

Andrew Lansley in his speech did mention the £400m given to the NHS to support carers, but there was no mention of social care or Dilnot. When asked about it, no firm commitments were forthcoming. Understandably, Lansley is focussed on getting his Health Bill through Parliament but we must get the Conservatives to see social care as a priority.

Instead of commitment to reforming social care, there is a reticence emanating from Conservatives. It usually starts with talk of implementing Dilnot being very expensive and a lot of work still to be done. Implementing Dilnot is £1.7bn per annum; the Tories have just found, out of nowhere, £1.05bn for bins and council tax.

The Dilnot Commission will report next week on how social care in England should be funded. Currently, if you have assets, including property, worth over £23,500 you will likely pay for social services or residential care. This means a lot of people pay for all of their care whilst some pay for none of their care.

Dilnot is charged with finding a system that will create a “fairer” system that will also encourage people to save for care that they may need. The focus will be on encouraging people to purchase insurance to cover future care costs.

The choice comes down to a voluntary insurance scheme or one where everybody has to purchase care insurance – just like all car drivers must purchase car insurance. Or there could be a voluntary scheme where people are automatically enrolled into it but can opt out.

Politicians will then be left to choose, if they choose to do anything. But what hasn’t appeared in the debate so far, is the role of genetics.

Having a certain genetic profile can make it more likely (but not certain) that you suffer conditions such as Huntingdon’s disease or Alzheimer’s. However, your behaviour can also reduce the likelihood of these so knowing your genetic profile could encourage you to change behaviour and reduce the chance of having various conditions.

Knowing can also help you and your family prepare, which is what one person felt when faced with this experience who I was talking to recently. And genetic profiling will become much more common in the future as costs rapidly decrease.

The impact of this on a care insurance market are obvious. In a voluntary insurance scheme, if you don’t have to share your genetic profile with insurance companies, those most at risk of ill health will take insurance but companies won’t know who has the greater risk so all prices will go up, fewer people will take insurance and insurance companies will leave the market. And in a voluntary system where you do have to tell the insurance company, there could be lots of people who will be refused insurance. They will be discriminated against because of their genetic profile.

However, in a compulsory insurance model where you don’t have to tell insurance companies, people will still be able to know their genetic profile and plan for the future but without fear of discrimination, and insurance companies could spread the risk and costs amongst a greater number of people.

Interestingly in 2003, the Department of Health declared: “As our understanding of genetics advances, the case for private health insurance as an alternative to our universal tax financed NHS diminishes”. It may be the same should apply to social care as well.

You may have seen media reports last week about 800,000 people not getting help with social care. This was based on an Age UK report that estimated there were 2 million older people in England with care related needs and 800,000 of these were not getting formal support from public or private agencies.

The widespread media reports implied that there were 800,000 people whose needs were not being met and levels of ‘unmet’ need is a cause for concern amongst politicians and decision makers. Of course, one of the biggest worries has been that if people are not being supported by councils or other agencies, then how do you know how many of them are there? This is a problem facing the Dilnot Commission which is considering the future funding of social care in England.

The answer of course lies with carers. Because we survey who is providing care, then you can work out how many people have care and support needs.

Going from the census 2001 and last year’s household survey, there are approximately 4.8m people providing care in England. The household survey found 37% were sole carers and 63% were sharing it with another person. This would equal approximately 3.2m people with care and support needs being supported by carers in England alone. Plus, there would be adults being cared for by young carers that were underestimated in the census and not covered by the household survey.

It is not that needs are going unmet, they are being met, just not by people who are paid to do so. The vast majority of need is being met by carers. They are the ones who are there when social services or private care agencies are not.

When we launched our Give Carers a Break campaign, Peter Hay, President of Association of Directors of Adult Social Services addressed the politicians and carers involved. He said that because it is carers who are the first ones providing care and we rely on them so much, then the NHS’s £400m for carers has to be spent on carers and prioritised first ahead of other needs.

Take care

Gordon

PS: Carers need continued support. Don’t forget to tune-in to BBC Lifeline’s appeal for carers on BBC One on June 19th at 4:45 pm (if you are in Scotland, Wales, Northern Ireland) and 5:15 (if in Scotland). Please do spread the word.

The Government’s Vision for Adult Social Care (England) requires local authorities to provide personal budgets for everyone eligible for on-going social care, preferably as a direct payment. The aim is to give choice and control to the people needing support rather than social workers deciding the package of support they would get.

People should be able to choose and control the services they receive and personal budget is a method for doing this. More choice and control can give them a sense of independence and help transform lives.

There is a genuine fear that councils are deliberately withholding the offer of personal budgets to retain control, or that the council says a personal budget has been allocated but in reality the council and not the person controls what it is spent on.

This is why the Government are promoting Direct Payments over personal budgets. With Direct Payments, the money is actually given to the person to spent and manage in contrast to a personal budget where the council administers the budget, despite the person being in control.

However, using a Direct Payment brings extra burdens for people. Unlike with personal budgets where the Council remains the employer, in Direct Payments the holder becomes the employer and all that entails. Tax issues, redundancy if you dispense with a personal assistant, holiday pay and sick cover and dreaded paperwork.

Research showed that the burden of managing a Direct Payment or personal budget often falls on the carer, adding to their responsibilities. By promoting Direct Payments, the Government is effectively increasing the burden on carers.

I worry that people who don’t want a personal budget will be pushed into receiving one because of the Government target, and that there may be some people who would prefer a personal budget but are pushed into a Direct Payment because of the Government guidance.